by Liane Kirchner, December 2025
At birth, I was diagnosed with Klippel-Trénaunay syndrome. For a long time, the malformation was perceived mainly through what was visible: my left leg with a large port-wine stain and markedly dilated, visibly protruding veins lay outside common expectations. After consulting the pediatrician during my childhood, my parents saw no reason for further examinations or interventions. I was doing well. The condition progressed without complications. I grew up with a strong sense of being protected. Fortunately, I was not limited and laughed at my grandmother, who would always call after me: “Child, don’t run so fast.”
When I started school, especially during physical education and swimming classes, I often noticed curious looks from classmates. I always interpreted them as kind and friendly. With puberty, however, this perceived curiosity turned into something else. At the swimming pool, a sentence was said that I never forgot: “She has the plague of bumps.” From then on, looks were no longer neutral. The possibility of ridicule suddenly entered the room. I did not just feel my body anymore — I experienced it as a target.
I did not wear short dresses or shorts — or perhaps no longer. On hot summer days, people would ask whether I wasn’t too warm. Sometimes I explained myself; sometimes I simply smiled and brushed off the comment.
Over the years, I occasionally developed inflammations of the superficial veins. This became the reason — or the trigger — for consulting a specialist toward the end of the 1980s. My mother and father accompanied me on my medical journey well into my thirties. Even today, this makes me smile.
About 200 kilometers away, in Hamburg, one of the leading vascular surgeons in the German-speaking world and beyond was practicing: Professor Dirk A. Loose. However, the specialists my parents and I consulted locally did not associate my condition with him, and so I ended up being operated on in a dermatology clinic in Minden, Westphalia.
The surgical technique used at that time corresponded to a crossectomy with local ligations. In a crossectomy, a superficial vein is tied off in the groin at its junction. This approach is also used in conventional varicose vein surgery, where an incompetent segment often disrupts venous return toward the heart. In the case of a vascular malformation, however, such a procedure only makes sense if it has been clearly established beforehand which pathways the blood actually uses to drain.
In this context, it becomes clear why extensive imaging assessments are required before such interventions. If veins are removed or ligated even though they serve as collateral drainage pathways, outflow obstruction may occur. As a result, swelling, pain, a sensation of pressure, and thrombotic complications can increase. Depending on the vascular configuration, venous return may then be redirected more strongly through malformed, valveless vascular spaces, further intensifying congestion mechanisms.
In the early 2000s, I began once again to engage more actively with my condition. With the rise of the internet, I connected with other affected individuals through the German association. A meeting in Oberhausen made me feel quite small in comparison to my own diagnosed KTS — I met people with far more complex clinical pictures than mine. It was a very meaningful experience, and I decided at that time to undergo a phlebography in Hamburg with the radiologist Professor Dr. Weber, in other words, more advanced imaging diagnostics. This was intended to mark the beginning of a treatment strategy.
I cannot say why, but I did not continue to pursue this path. It is often a certain level of suffering that motivates me to re-engage with the condition and further treatment strategies. At that time, I was doing relatively well. One important conversation I had during this period was with a specialist in my then hometown of Lippstadt. He advised me never to undergo surgery again. He pointed out that every operation carries risks and that, with all due respect for colleagues, even the most experienced surgeon cannot simply “fix” such complex malformations.
In 2008, my life situation changed. The year began with the joyful news of my pregnancy. The time leading up to delivery passed without complications, and in September I gave birth to a healthy boy by planned cesarean section. I consciously chose a cesarean section because intuitively I did not want to risk excessive pressure on the pelvic tissues. I was also determined to avoid scenarios such as an episiotomy.
In the years that followed, I attended another meeting of the German association in Cologne. Once again, I realized how much mental preparation is required for encounters with other affected individuals — with them, with myself, with my condition, and with possible surgical and treatment options. This is true for every medical examination and even for fittings of compression garments. I spoke with people who engaged in a great deal of running, and it struck me that for many of these athletes, the question of surgery did not arise at all.
At that meeting, I had the opportunity to speak with Professor Dirk A. Loose. Professor Loose is a vascular surgeon based in Hamburg. He is the highly knowledgeable surgeon I might have needed at the end of the 1980s.
We agreed to carry out further diagnostic evaluations and to develop a clear treatment strategy. However, it was not until 2019 that I worked out a concrete plan together with Professor Loose and began planning the surgeries — three operations in total.
With the outbreak of the COVID-19 pandemic in 2019/2020, the surgical plans were put on hold. For the time being, the topic was no longer relevant to me. During this period, at the age of 50, I began to focus on reducing my weight. I also continued to experience sporadic venous inflammations. Pain and weight became my new focus, and I searched for ways to feel better. I often lacked motivation in everyday life and noticed that I had difficulty following conversations at work. I constantly felt as though I was in a mental fog.
I first reduced sugar and refined carbohydrates. Quite quickly, I noticed less swelling in my fingers during warm summer weather. This impressed me and encouraged me to continue experimenting and exploring what might be possible when I consciously listened to my body’s signals. I became a fan of intermittent fasting. I had always been able to skip breakfast easily. In the evening, eating stopped at eight o’clock. It did not work immediately, and I needed many attempts. I reassured myself that eventually I would be able to maintain the routine, even if not always strictly. The mental fog — or the “food coma” after lunch — eventually disappeared. My weight decreased, and strength training with a personal trainer helped me build muscle.
Implementing my new preventive strategy required many attempts, but at some point it worked quite well. Nevertheless, dairy products continued to cause pain and venous inflammation. By then, I had become quite skilled in elimination approaches to food. Often, I could tell in the morning whether the day would be good or bad. Sometimes my toe was swollen, and putting on shoes was painful.
The level of suffering did not initially lead me to seek medical care, but rather to try a ketogenic diet: avoiding dairy products, bread, pasta, and rice. This brought a turning point. The veins no longer became inflamed and felt elastic and soft. Moderate strength training, especially of the legs, gave me the feeling that the leg had become more compact and better perfused. My most recent visit, for now, to an angiologist at Gefäßmedizin Ost in St. Gallen in 2025 confirmed that the many small “inflammations” had in fact been resolved venous thromboses.
I now have the inflammations under control, but I must also say that many small building blocks come together. The angiologist referred me to a hematologist to assess my coagulation tendency, as I had expressed a wish to begin bioidentical hormone therapy. My goal was to address lack of energy, insomnia, blurred vision, hot flashes, a persistently enlarged abdomen, and many other seemingly age-related symptoms. The blood tests performed by the hematologist were negative with regard to a pronounced tendency toward hypercoagulation. My angiologist discussed the findings with my gynecologist, and from her perspective there was nothing standing in the way of starting hormone therapy (estrogen and progesterone). Since then, many things have improved, and I can once again consume dairy products without developing inflammation. I attribute this to the interaction between hormones and inflammatory processes in the body. Fortunately, I do not need to take anticoagulant medication, as the estrogen is applied transdermally.